Copyright is owned by the Author of the thesis. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The thesis may not be reproduced elsewhere without the permission of the Author.

BRAIN INJURY AND DISCRIMINATION: THE EFFECTS OF VISIBILITY AND PERCEPTIONS OF

DANGEROUSNESS AND RESPONSIBILITY

Lynette A Foster BScHon, MSc

Department of Psychology Massey University

Wellington New Zealand

This thesis is submitted as a partial fulfilment of the requirements for the degree of Doctorate of Clinical Psychology

28 February 2012

ii

TABLE OF CONTENTS

List of Tables ............................................................................................................... iv

List of Figures ............................................................................................................... v

Abstract ........................................................................................................................ vi

Candidates Declaration ............................................................................................ viii

Acknowledgements....................................................................................................... ix

Chapter 1: Introduction .............................................................................................. 1

Chapter 2: Brain Injury .............................................................................................. 8

Definition and severity .............................................................................................. 8

Prevalence and causes ............................................................................................... 9

Misconceptions about brain injury .......................................................................... 11

Secondary complications ......................................................................................... 12

Chapter 3: The Visibility of a Disability .................................................................. 19

Research on visibility effects .................................................................................. 22

Chapter 4: Stigma ...................................................................................................... 25

Stereotypes, prejudice and discrimination .............................................................. 25

Stigma ...................................................................................................................... 26

Relationship between stigma, stereotyping and prejudice ................................. 29

Stigma and brain injury ........................................................................................... 30

Chapter 5: Danger and Responsibility Models and familiarity and

knowledge about how to interact ............................................................................... 32

Familiarity with individuals with brain injury ......................................................... 32

Lack of knowledge about how to interact ............................................................... 34

Responsibility model ............................................................................................... 36

Weiner’s Attribution Theory ............................................................................... 38

Danger model .......................................................................................................... 41

Chapter 6: Article One - Do visible scars influence people’s predictions of

other people’s willingness to socialise with an adolescent with brain injury? ..... 44

Abstract ................................................................................................................... 46

Introduction ............................................................................................................. 47

Visible signs of disability .................................................................................... 48

Familiarity with brain injury .............................................................................. 49

iii

The current research ........................................................................................... 50

Method ..................................................................................................................... 51

Results ..................................................................................................................... 55

Discussion ............................................................................................................... 58

Appendix A ............................................................................................................. 63

References ............................................................................................................... 64

Chapter 7: Article Two - Brain injury and discrimination: Two competing

models – perceptions of responsibility and dangerousness ..................................... 67

Abstract ................................................................................................................... 69

Introduction ............................................................................................................. 70

Responsibility model ........................................................................................... 71

Danger model ..................................................................................................... 73

Populations ......................................................................................................... 74

Visibility .............................................................................................................. 75

Other factors which may influence willingness to interact with survivors

of brain injury ..................................................................................................... 75

The current research ........................................................................................... 77

Study one ................................................................................................................. 78

Study two ................................................................................................................. 84

Discussion ............................................................................................................... 95

Appendix A ........................................................................................................... 103

References .............................................................................................................. 105

Chapter 8: Overall Discussion ................................................................................ 109

Article One ............................................................................................................ 109

Article Two ............................................................................................................ 110

Discussion and clinical implications ..................................................................... 112

Limitations and future research ............................................................................. 116

Conclusion ............................................................................................................. 118

Appendix A – Photos ............................................................................................. 119

References ................................................................................................................. 122

iv

LIST OF TABLES

Table 1. Study one conditions 79

Table 2. Study two conditions 85

Table 3. Pearson’s correlation matrix for the Danger Model 88 Table 4. Pearson’s correlation matrix for Responsible Model 92

v

LIST OF FIGURES

Figure 1. Weiner’s attribution model showing a direct relationship 38 between responsibility and willingness to assist and the

relationship mediated by anger and pity

Figure 2. Danger model showing a direct relationship 42 between perceptions of dangerousness and willingness to assist, and fear mediating this relationship

Article One Figure 1. Two way interaction between Participant (male and female)

and Adolescent (male and female). Standard error bars are also shown. 57

Figure 2. Two way interaction between Photo (scar and no scar) and

Participant (male and female). Standard error bars are also shown. 57

Article Two Figure 1a. Fear mediating the relationship between perceptions of 89

dangerousness and willingness to socialise Figure 1b. Moderated mediation - fear mediating the relationship 90

between perceptions of dangerousness and willingness to socialise and Photo (scar/no scar) moderating the mediated relationship

Figure 2a. Pity and anger mediating the relationship between 93

responsibility and willingness to socialise Figure 2b. Moderated mediation – pity and anger mediating the 95

relationship between perceptions of responsibility and willingness to socialise and Photo (scar/no scar) moderating the mediated relationship

vi

ABSTRACT The aim of the research outlined in the following pages was to examine the

impact that the visible signs of brain injury and perceptions of dangerousness and

responsibility have on participants’ willingness to socialise with adolescent survivors of

brain injury. The research has two articles, and Article Two has two studies.

In Article One, participants were shown a picture of either an adolescent male or

female, with or without a head scar, with a brief vignette advising that the adolescent

had sustained a brain injury. Participants reported that others would be more willing to

socialise with the adolescents with a scar, than the adolescents with no scar, and female

participants reported that others would be more willing to socialise with the female

adolescent, than the male adolescent.

Article Two used a similar paradigm to Article One. Study one of Article Two

replicated Article One and added an additional factor, knowledge about how to interact,

as a factor influencing willingness to socialise. Results showed that participants with

more knowledge about how to interact with survivors were more willing to socialise,

than participants with less knowledge. Study two examined whether describing the

adolescents as dangerous or responsible for contributing to, or causing their brain

injury, would influence willingness to socialise. Results showed strong support for a

danger model, where perceptions of dangerousness were mediated by fear. When the

adolescents’ were described as dangerous, fear increased and subsequent willingness to

socialise decreased.

To a lesser extent, support was found for a responsibility model. Perceptions of

being responsible (falling and sustaining a significant injury to the head after drinking

too much alcohol) increased anger but anger in turn did not impact willingness to

vii

socialise. Being described as not responsible (as a result of a brain tumour) increased

pity, but again there was no relationship between pity and willingness to socialise.

This information is useful for rehabilitation professionals assisting adolescents’

re-integration back into the community post injury. Informing survivors that people’s

attitudes may change once visible signs of injury heal may be relevant when managing

expectations of how others may treat them. It may also be useful to discuss how others

may perceive them when they have contributed to causing their current condition or are

perceived as dangerous. Finally, knowledge about how to interact may be useful for

policy makers when designing campaigns to reduce discrimination.

viii

Candidate’s Declaration

I, Lynette Foster, candidate for the degree of Doctor of Clinical Psychology at Massey University Wellington, do hereby certify that:

1. The papers and thesis contained herein comprise entirely my original work towards the degree,

2. This work has not been submitted to any other university or institution for a higher degree,

3. The thesis including papers is less than 65,000 words in length, excluding tables, references and appendices,

4. Ethics approval for the research was obtained from: Study One - Massey University Ethics Committee: Southern B, Application 10/62. Study Two - Massey University Ethics Committee: Southern B, Application 11/13.

........................................................................................

Lynette A Foster

ix

Acknowledgements

I would like to thank my primary supervisor Professor Janet Leathem for her

support and guidance while completing my thesis and my second supervisor Dr Steve

Humphries for his statistical advice. Their knowledge and support was much

appreciated and needed throughout this time. I would also like to thank Associate

Professor Paul Jose for his assistance with structural equation modelling and for

listening to my attempts to understand structural equation modelling.

On a personal note, I am very appreciative of the support, assistance and

nurturance from my partner, Neil de Wit, and two children, Jessica and Katie. They

were very encouraging during this time and acknowledged and celebrated my

accomplishments and listened to my many challenges and stories throughout my

journey. I would also like to acknowledge and thank my friends for listening and being

there for me, particularly Robyn Burton and Fran McDonald who listened to my newly

learnt theories and ideas! Finally, my journey was made all the more enjoyable as a result of the amazing support and nurturance from fellow clinical students, especially Lucia Munoz Larroa,

Lauren Callow and Veena Sothieson. Also I would like to acknowledge Dr Maree Hunt

for her tireless assistance and support when starting this journey.

Contribution of author to project: The author was responsible for most aspects of this research, including the formulation of research questions and data collection in Wellington, data analysis and interpretation and write up of the papers and thesis.

1

CHAPTER 1

INTRODUCTION The ideas for this research evolved from research that I had conducted at

Masters level. The focus of that research had been to examine the effect that visible

markers of brain injury had on the attributions made by the general public of an

adolescent’s undesirable behaviour. Results showed that when the brain injury was

visible, people attributed the behaviours equally to brain injury and adolescence. In

contrast, when the injury was not visible, people attributed the behaviours more to

adolescence (Foster, 2010; McClure, Buchanan, McDowall, & Wade, 2008; McClure,

Devlin, McDowall, & Wade, 2006). These results suggest that more consideration was

given to the brain injury as the cause of the undesirable behaviour when visible signs of

brain injury were present, than when they were not.

Thinking about the implications of McClure et al.’s. (2008; 2006) findings and

my Masters research and extensive reading in the areas of attribution theory, stigma and

brain injury, raised questions about whether the visibility of a brain injury would

influence discriminatory behaviours. Specifically, would the visibility of a brain injury

influence people’s willingness to socialise with adolescents who had sustained a brain

injury. If people were more likely to excuse behaviour when a survivor of brain injury

had a visible marker of injury (McClure, et al., 2008), then perhaps they would be more

likely to socialise with or assist a survivor when a visible marker of injury was present.

By comparison, survivors without a visible marker (and this applies to a large

proportion of people with brain injury) may be more likely to experience discrimination.

In support of this contention, Zahn (1973) found that young people with disabilities had

better interpersonal relationships when their disability was visible than when it was not.

2

Willingness to socialise and visibility effects have not been specifically studied

in terms of brain injury before, although the work of Linden and colleagues has gone

some way towards this. Linden and colleagues found that there was more willingness to

help and less prejudicial attitudes when adult survivors of brain injury had acquired

their injury through organic or external means (e.g., brain haemorrhage) than when it

was self-initiated or sustained by internal means (e.g., started a fight after drinking

alcohol) (Redpath & Linden, 2004), and when the injury was not their fault (Linden,

Hanna, & Redpath, 2007).

While these studies go some way towards the examination of stigma and brain

injury, they do not examine the impact visible signs of brain injury have on attitudes.

Furthermore, they do not identify how ‘blame’ or perceptions of responsibility lead to

prejudicial attitudes and helping behaviour. Is there a direct relationship between the

responsibility for a brain injury and attitudes, or is this relationship mediated or

moderated by other factors? Examining mediating and moderating factors is essential

when attempting to understand the processes of discrimination and the current research

will address this, as well as the impact the visibility of a brain injury has on people’s

willingness to socialise with survivors.

Related to this are findings from the disability literature associating the visible

markers of disability with more prejudice and discrimination than when there are no

visible markers of disability (Latner, Stunkard, & Wilson, 2005; Matthews &

Harrington, 2000). However, typically, the literature examines physical disabilities and

prejudice and discrimination. Considerable research examining prejudice,

discrimination and stigma has also been conducted in the mental health field and it

seemed appropriate to examine brain injury in a similar manner. There is considerable

rationale for this. Some people believe that brain injury is associated with madness and

3

altered personality (Simpson, Mohr, & Redman, 2000) and others describe survivors of

brain injury as mentally disabled (Linden & Boylan, 2010). Furthermore, complications

resulting from a brain injury can include mania, post traumatic stress disorder (Kim et

al., 2007) and depression (Tsaousides, Ashman, & Seter, 2008). Finally, aggression is

associated with brain injury (Dooley, Anderson, Hemphill, & Ohan, 2008; Kim, et al.)

and mental illness (Hiday, 1997), and both conditions are potentially hidden illnesses

which may only become apparent to others during interactions.

Research examining mental illness and stigma has often employed Weiner’s

attribution model when attempting to identify the processes involved in stigmatisation

of individuals with mental illness. Weiner’s (1995) causal attribution theory proposes

that individuals make cognitive appraisals regarding the controllability of a person’s

stigmatising condition and try to identify whether the person was responsible or not for

causing their condition. A strong belief regarding responsibility elicits emotional

responses such as anger or pity, which in turn influence behavioural responses

(willingness to help or interact). For example, when the cause of a mental illness is self-

inflicted (illegal drug use) reported beliefs about responsibility are higher, than when

the cause is accidental or organic (as a result of an accident) (P. W. Corrigan,

Markowitz, Watson, Rowan, & Kubiak, 2003). Higher beliefs about responsibility are

associated with increased feelings of anger and less willingness to assist and lower

beliefs about responsibility are associated with increased pity and more willingness to

assist (Weiner, 1995).

Support for Weiner’s attribution theory is found in the mental illness literature

which shows that responsibility for causing an illness impacts emotions, and emotions

subsequently influence behaviour and attitudes (P. W. Corrigan et al., 2002; Martin,

4

Pescosolido, & Tuch, 2000; Reisenzein, 1986; Weiner, Perry, & Magnusson, 1988).

The current research employs Weiner’s model within a brain injury perspective.

There are a number of factors which potentially influence the willingness of the

general public to interact or assist survivors of brain injury. A danger model has been

developed to explain aspects of stigma in the mental illness literature (P. W. Corrigan,

2000; P. W. Corrigan, et al., 2003; P. W. Corrigan, et al., 2002). According to this

model, when an individual with a mental illness is perceived as dangerous, fear

increases and people are more likely to withhold assistance and avoid encounters, than

when they are not perceived as dangerous (P. W. Corrigan, et al., 2003). The danger

model may be relevant when examining brain injury and discrimination as research

shows that students fear survivors of brain injury more than the general public does,

describing survivors as violent, unpredictable and aggressive (Linden & Crothers,

2006). Qualitative research also found that the public reported that survivors of brain

injury would have difficulties with aggression, frustration, and irritation and emotion

regulation (Linden & Boylan, 2010). Based on these findings the current research

examined perceptions of dangerousness as a factor influencing willingness to socialise

with survivors of brain injury.

Other factors which may influence the willingness of the general public to

interact with survivors of brain injury are: 1. people’s level of familiarity with

individuals with brain injury, and 2. knowledge about how to interact with them.

Albrecht, Walker and Levy (1982) found that this uncertainty about how to interact

influenced people’s willingness to socialise with individuals with stigmatising

conditions (conditions ranging from diabetes and cancer to mental illness and drug

abuse). In preparing for the current research only one study was found that examined

familiarity with individuals with brain injury and discrimination; where it was found

5

that people’s familiarity (measured by asking a yes/no question) had no impact on

prejudice and discriminatory attitudes (Linden, et al., 2007). However, the mental

illness literature shows considerable support for a familiarity hypothesis. People with

higher levels of contact or familiarity with individuals with mental illness report less

stigma, relative to people with low levels of contact (P. W. Corrigan, Edwards, Green,

Diwan, & Penn, 2001; P. W. Corrigan, Green, Lundin, Kubiak, & Penn, 2001; P. W.

Corrigan, et al., 2003). Accordingly it seemed important to also consider the amount of

familiarity (based on the amount of individual contact with survivors of brain injury)

and knowledge about how to interact as factors influencing willingness to socialise with

survivors of brain injury as part of the planned research.

Finally, there is a lack of research examining willingness to socialise with

adolescents who have sustained brain injuries. Adolescence is a time of self doubt and

some adolescents fear being judged about how they dress, behave or talk, and are

preoccupied with differences between themselves and others (Miller & Sammons,

1999). The effects of navigating adolescence may be exacerbated when an adolescent

sustains a brain injury. Accordingly, identifying factors which may impact this group is

an important step towards developing strategies to assist with rehabilitation.

In summary, there is little research examining brain injury and discrimination

and none found examining how and under what conditions adolescent survivors of brain

injury experience discrimination. For example, do perceptions of dangerousness and

responsibility influence stigmatising attitudes by impacting emotional responses (fear,

anger and pity)? Furthermore, there is a lack of research exploring the effects that the

visible signs of brain injury have on the willingness of other people to socialise with

adolescent survivors of brain injury, and the effect the visibility of an injury has on

perceptions of dangerousness and responsibility. Research examining these processes is

6

essential as it may assist in identifying factors that are important for successful

community integration post brain injury. This, then, became the focus of the current

research, which will be reported as two articles.

Article One examined whether visible markers of brain injury influenced

people’s predictions of the extent to which other people would be willing to socialise

with adolescent survivors of brain injury. The effect of the gender of the observer

(participants) and adolescent with brain injury were also examined. Familiarity with

individuals with brain injury was examined as it was expected that participants’ level of

familiarity would influence their predictions of others’ willingness to socialise. Article

One asked participants their opinion about other people’s willingness to socialise to

minimise social desirability effects as the author collected data in public locations.

Article One builds on previous research in two ways. It examined the impact the

visibility of a brain injury had and the impact this has for adolescents, as opposed to

adults.

Article Two has two studies. Study one replicated Article One and contributed to

the literature by including a lack of knowledge about how to interact as a factor

influencing discriminatory behaviour. Study two examined the effect visible markers of

brain injury have on people’s willingness to socialise with survivors of brain injury

employing Weiner’s full responsibility model and a danger model. Pity and anger were

examined as mediators between the relationship of personal responsibility for a brain

injury and willingness to socialise. Visible markers of brain injury were examined as

moderators of this relationship. Fear was examined as a mediator in the relationship

between perceptions of dangerousness and willingness to interact, as research shows

that people fear individuals with brain injury (Linden & Boylan, 2010; Linden &

7

Crothers, 2006). Again, visible markers of brain injury were examined as moderators of

this relationship.

Article Two built on and extended previous research in three ways. It examined

mediating (pity and anger) and moderating (visible signs of injury) variables in the

responsibility model. It examined a danger model in relation to brain injury for the first

time, and included visibility effects as a moderator of this relationship. Finally, it

examined a lack of knowledge about how to interact as a factor influencing willingness

to socialise.

Chapter two provides definitions of brain injury and traumatic brain injury (TBI)

and information about prevalence and causes. Chapter two also includes common

misconceptions about brain injuries, secondary complications that may arise following a

brain injury and community re-integration aspects of rehabilitation. Chapter three

discusses visible and invisible disabilities and related research. Chapter four focuses on

stigma and provides definitions for stereotyping, prejudice, discrimination and stigma

and how these concepts are related in relationship to brain injury. Chapter five discusses

other factors (perceptions about responsibility and dangerousness, familiarity and

knowledge about how to interact) which may influence discriminatory responses. These

chapters are followed by Article One and Article Two chapters and an overall

discussion chapter.

8

CHAPTER 2

BRAIN INJURY

Definition and severity

Brain injuries are common and are caused by a variety of factors such as

infections, brain tumours, drugs, alcohol, hypoxia (lack of oxygen to the brain) and

solvents (Brain Injury New Zealand, 2011; Kelly, Brown, Todd, & Kremer, 2008). A

traumatic brain injury (TBI) is caused by an external trauma to the brain by either an

object penetrating the skull (open head injury) or a blunt force trauma to the head with

no penetration (closed head injury) (Lucas & Addeo, 2006). Road traffic accidents,

falls, sporting accidents, assaults and being hit by something are common causes of TBI

(Lucas & Addeo; McKinlay et al., 2008). The cause of a TBI varies as does the

subsequent severity of the injury.

There are a number of ways to ascertain the severity of a TBI including the time

frame of posttraumatic amnesia (PTA: memory of events immediately following the

trauma), Glasgow Coma Scale (GCS) and loss of consciousness (LOC) (Lucas &

Addeo, 2006). When PTA is less than 1 hour the injury is rated as mild, 1 to 24 hours is

rated as moderate and when PTA exceeds 24 hours the injury is rated as severe (Lucas

& Addeo). The resulting classification system, mild, moderate or severe typically

corresponds with the level of recovery, with longer PTA associated with poorer

recovery (Lucas & Addeo).

The GCS measures best verbal response, eye-opening and motor responses

(Teasdale & Jennett, 1974). Scores range from 3 to 15 points, with 13 points and above

indicating mild TBI, 9 to 12 points indicating moderate TBI and 8 or less indicating

severe injury. As well as indicating the severity of an injury, the GCS also indicates

likely prognosis; the higher the score the better the prognosis.

9

A TBI is classified as mild when LOC is 30 minutes or less and moderate to

severe TBI when LOC exceeds 30 minutes. The three measures of TBI severity

discussed above overlap with regard to assessing deficits and the measure selected is

based on the patient population, health professionals skill set and specific setting (i.e.,

whether it is in a doctor’s office, hospital or at the scene of the accident) (J. D. Corrigan,

Selassie, & Orman, 2010).

Prevalence and causes

Traumatic brain injury is quoted as one of the leading causes of disability and

death for children, young adults and the elderly in the United States, where there are

more than 5.3 million people living with a TBI related disability (Centers for Disease

Control and Prevention, 2011). In New Zealand 90 people sustain a TBI every day, and

24,000 are diagnosed as having experienced concussion (classified as a mild TBI) every

year (Brain Injury New Zealand, 2011). The implications of these statistics are rarely

fully understood in terms of the financial cost to society and the subsequent cognitive,

emotional, sensory and motor impairments which impact survivors’ recovery and

quality of life. Furthermore, unlike physical disabilities, which are mostly visible to

others, TBI often has no outward sign of disability making it difficult for others to

notice and accommodate subsequent deficits and difficulties experienced by survivors.

In the United States 506 per 100,000 people sustain a TBI each year and 269 per

100,000 in Finland (see review of epidemiology by J. D. Corrigan, et al. (2010)). The

figure is considerably higher in New Zealand with 1750 per 100,000 people sustaining a

TBI each year (McKinlay, et al., 2008). The reported statistics vary as a result of

methodological differences. The type of data used for analysis, methods of calculating

and the source of the data vary among researchers (J. D. Corrigan, et al.). Data may be

obtained only from hospital admissions or include accident and emergency and doctors

10

visits. Research using self-report measures find higher incidences but may suffer from

inaccuracies due to memory and reporting deficits (Body & Leathem, 1996). Research

reporting lower incident rates of 100-300 per 100,000 per annum (Cassidy et al., 2004)

and 269-506 per 100,000 (J. D. Corrigan, et al.) included only hospital admissions or

visits whereas McKinlay et al.’s research included all medical assistance sought for

TBI. McKinlay et al. found that 30% of all cases were admitted to hospital and the

majority were seen by general practitioners or accident and emergency departments. As

a result of the varying methodology practices it is difficult to accurately estimate actual

prevalence; nonetheless, TBI is considered a significant health problem worldwide.

The New Zealand statistics reported above were from a Christchurch cohort

study involving 1265 participants. This study found that 31.6% of the population

suffered at least one TBI that required medical assistance by the time they were 25 years

of age (McKinlay, et al., 2008). The highest rates of TBI were in the 15 to 20 age group

and males had higher rates (38%) than females (24%) (McKinlay, et al.). These gender

and age statistics with males, adolescents and young adults being more likely to suffer a

TBI than females and older adults (excluding the elderly) are similar to overseas studies,

e.g., Cassidy et al. (2004); J. D. Corrigan et al. (2010). The elderly are another at risk

group, with several studies showing that after approximately 70 years of age the

incidents rates of TBI increase with advancing age due to falls and motor vehicle

accidents (Burns & Hauser, 2003).

Falls are reported as the most common source of injury up to 14 years of age in

New Zealand and after 15 years of age rugby, assault, motor vehicle accidents and being

hit with an object are reported as the most common causes of injury (McKinlay, et al.,

2008). Other countries (United States, Australia and France) report similar statistics,

11

with road traffic accidents and falls accounting for the majority of TBI (Burns &

Hauser, 2003; Cassidy, et al., 2004; J. D. Corrigan, et al., 2010).

In summary, TBI is one of the leading causes of disability and death worldwide

with road traffic accidents and falls accounting for the majority of injuries. Adolescents

and young adults are one of the most at risk groups with males twice as likely as

females to sustain a TBI. Therefore, research is required to identify appropriate

rehabilitation and education strategies to assist this high risk group, with an emphasis on

males. Furthermore, the “invisible” nature of TBI needs to be considered when planning

research to understand the impact visible and invisible injuries have on recovery.

Finally, the high prevalence rates and the lack of outward signs of disability have

resulted in TBI being described as the “invisible epidemic” (Centers for Disease Control

and Prevention, 2011). Brain injuries are classified as a brain injury or a TBI dependent

upon the cause of the injury; however, from this point forward, for ease of reading, all

injuries will be referred to as a brain injury, except when discussing prevalence and

cause statistics.

Misconceptions about brain injury

A brain injury can be a debilitating condition impacting all aspects of a

survivor’s life. Survivors must focus not only on their recovery but also contend with

misconceptions and beliefs held by the public and others about the recovery process and

outcomes of brain injury. The public, family members of survivors of brain injury and

health professionals hold a number of misconceptions about brain injury which may

impact attention and care considerations. The public believe that brain injuries heal as

quickly as physical injuries, and once survivors receive treatment and are discharged

from hospital they are physically and mentally well (Swift & Wilson, 2001). Further,

the public believe that the recovery from a brain injury is primarily influenced by the

12

amount of effort expended by a survivor and that complete recovery is possible in most

instances (Gouvier, Prestholdt, & Warner, 1988; Hux, Schram, & Goeken, 2006).

There is a lack of awareness of the time frames involved in recovery and a lack

of understanding that further injury is more likely due to survivors’ vulnerability (as a

result of cognitive or physical difficulties (Chamberlain, 2006)). Furthermore, the public

and non-expert health professionals fail to appreciate that the ability to perform

common tasks varies from day to day as a result of fatigue and sometimes undesirable

behaviours resulting from a brain injury persist (Swift & Wilson, 2001). These

misconceptions may impede survivors’ recovery efforts. As a result of these common

misconceptions about injury, which are held in Britain (Chapman & Hudson, 2010) and

the United States (Hux, et al., 2006), inferences of ‘malingering’ are also implied by the

public and health professionals (Chamberlain).

It is possible that misconceptions about brain injury endure and ‘malingering’ is

implied as a result of the ‘invisibility’ of brain injuries. Even though people are aware

of a person’s brain injury, there may be no ongoing salient mark of injury to remind

them of it (as with physical disabilities). Finally, common misconceptions, inferences of

malingering and a lack of visible signs of brain injury may result in survivors receiving

insufficient care and attention when seeking treatment and assistance with community

re-integration. The current research examines community re-integration and how some

common attitudes and beliefs held by the public may impact survivors’ recovery efforts.

Secondary complications

A number of potential deficits and problems can develop post injury. They may

develop as a result of brain damage sustained directly from the brain injury and/or

develop as survivors learn to live with a brain injury and contemplate their life post

injury and the effects the injury will have on their life. Survivors may experience

13

memory, attention and executive functioning problems (Draper & Ponsford, 2008) as

well as behavioural and personality difficulties (Willer, Johnson, Rempel, & Linn,

1993). Furthermore, depression (Tsaousides, et al., 2008), post traumatic stress disorder

and mania (Kim, et al., 2007) may develop as a result of the trauma experienced or

difficulties adjusting to subsequent disabilities. Severe brain injury may result in the

development of epilepsy which may occur months or years following the initial injury

(Lowenstein, 2009). Survivors may experience social difficulties and have trouble

obtaining employment post injury; they may be dependent on others and have

difficulties with community re-integration (Brooks, Campsie, Symington, Beattie, &

McKinlay, 1987; Kelly, et al., 2008; Sloan, Winkler, & Anson, 2007; Winkler,

Unsworth, & Sloan, 2006). The following sections discuss these factors and others

which may impact survivors’ community re-integration efforts post injury.

Cognitive Outcomes

The subsequent type and level of cognitive impairment following a brain injury

varies depending upon the severity of the injury, the location of injury and the time

since injury (Dikmen, Machamer, Winn, & Temkin, 1995; Draper & Ponsford, 2008;

Stratton & Gregory, 1994). Cognitive impairments may include difficulty with

attention, cognitive flexibility, concentration, memory, orientation, language, executive

functioning, motor functioning and self-awareness (Dikmen, et al., 1995; Millis et al.,

2001). Impairments may improve over time, deteriorate further or not change at all, with

memory, attention, executive functioning and processing speed being more likely to

remain impaired five to ten years post injury (Draper & Ponsford; Millis, et al.).

Children and adolescents can experience similar cognitive impairments as

discussed above post injury, although the severity of the injury does not always

correlate with the severity of subsequent impairments (as can be the case for adults as

14

well) (Conklin, Salorio, & Slomine, 2008; Middleton, 2001; Wassenberg, Max,

Lindgren, & Schatz, 2004). A number of factors such as premorbid functioning, age and

the developmental level of the child influence subsequent problems experienced

(Middleton). Suggestions that plasticity may facilitate normal development in children

is not always supported as areas in the brain that are currently developing rapidly may

be more vulnerable to damage, whereas areas that are already fully developed may incur

a temporary loss and then recover (Middleton). For these reasons, it is essential

professionals do not underestimate the effect mild injuries can have on children

(Middleton). Finally, children and adolescents may appear highly intelligent but exhibit

poor executive functioning skills, such as meta-representation, monitoring system

difficulties, lack of insight, attention, organisation and orientation which influence their

ability to plan and following through on goals (Middleton).

Emotional and behavioural outcomes

Common behavioural and emotional manifestations following brain injury for

adults include verbal and physical aggression, inappropriate social behaviour (e.g.,

social awkwardness, non-compliance, behaving in embarrassing ways, excessive

talking, bossiness, withdrawal, intrusive or prying, attention seeking and lighting fires),

lack of initiative, perseveration and repetitive behaviour and inappropriate sexual

behaviour (predominantly sexual talk) (Brooks, et al., 1987; Kelly, et al., 2008). Both

Brookes et al. and Kelly et al.’s research involved survivors with moderate to severe

brain injuries and Kelly found that the most common difficulties reported were verbal

aggression, inappropriate social behaviour and lack of initiative.

Further, research with adult survivors of moderate to severe injuries supports the

aggression findings (Baguley, Cooper, & Felmingham, 2006) and shows that survivors

report more verbal aggression than uninjured individuals, and people with spinal cord

15

injuries (Dyer, Bell, McCann, & Rauch, 2006). An interesting finding in Dyer et al.’s

research was that there was no difference in physical aggression between the three

groups examined (brain injury, no injury and spinal cord injury). This in turn, suggests

that survivors of brain injury are no more physically aggressive than the general public,

a distinction that may not be recognised by the public.

For children and adolescents, it is often behavioural problems that trigger a

referral for treatment (Middleton, 2001). Social disinhibition is commonly reported by

others, which may be a result of reduced insight into the needs and feelings of others

and inflexibility regarding play and activities (Middleton). Also adolescents and

children (aged 7 to 15 years) may not be aware that their subsequent deficits impact

their social functioning (Jacobs, 1993). This may arise as the children and adolescents

have not been sufficiently informed about the relationship between their injury and

subsequent behavioural difficulties (Middleton). Increased aggression, destructiveness,

impulsivity and overactivity are common problems reported by parents post injury

(McGuire & Rothenberg, 1986). Additional research supports the finding that children

and adolescent survivors experience increased aggression post injury (as reported by

parents) (Cole et al., 2008; Dooley, et al., 2008).

Psychosocial outcomes and community re-integration

Assisting survivors’ return to the community following a brain injury is an

essential component of rehabilitation and has been identified as a primary goal for

survivors (Sander, Clark, & Pappadis, 2010). The emphasis is typically on ‘full

community integration’ which involves education, vocational, recreational, social and

community activities (Sander, et al.). The challenges involved in this goal are

considerable, particularly considering the possible subsequent difficulties and deficits

post injury. In support of this contention, research showed that the severity of an injury

16

and subsequent disability and challenging behaviour (loss of emotional control,

disinhibition, impulsivity, frequent mood changes and irritability) predicted low

community integration (Sloan, et al., 2007; Winkler, et al., 2006). Furthermore over

time paid care facilitating active engagement reduces or ceases and gratuitous care

increases, leaving the responsibility to family and friends (Sloan, et al.).

Obtaining employment post injury is one of the aspects of community

integration that survivors have difficulty with. Kelly et al. (2008) found that 80% of

adult survivors (N = 190) with moderate injuries were unemployed. High

unemployment is reported in a number of studies, and chronic unemployment

contributes to the development of low self esteem and depression (Morton & Wehman,

1995). A lack of employment reduces the chances of social and leisure activities often

available when working. Another potential change for survivors is a reduction or

cessation of leisure activities such as sports and membership of clubs due to physical,

emotional or behavioural changes. Again, this reduces the chances for socialisation and

peer support.

A lack of employment as well as behavioural, cognitive and emotional

difficulties impact current relationships and impede the development of new

relationships (Morton & Wehman, 1995). Existing friendships and networks may

dissolve or reduce significantly increasing reliance on family members for social and

emotional support. Physical difficulties (wheelchair use, difficulties in eating and

personal care) may also reduce chances for socialisation and increase reliance on family

members and prompt realisations about lost independence. The social isolation and

dependence on family members impacts self esteem and increases the likelihood of

depression (Morton & Wehman). A lack of socialisation also reduces the chances for re-

learning and practicing social skills with peers (Morton & Wehman).

17

Socialising with peers is especially poignant for the group most at risk of

sustaining a brain injury (15-24 years), as this is a time when they are separating from

parents and family and joining others with similar outlooks and developing their own

identity, which is intricately tied up with peer acceptance and support (Erikson, 1970;

Miller & Sammons, 1999). As a result of subsequent behavioural, emotional and

physical difficulties children and adolescents often lose friends and have difficulty

developing new friendships (Middleton, 2001).

The potential number and range of subsequent changes and difficulties post

injury understandably impact on survivors’ attempts to re-integrate back into

communities and friendships. Although anger management and training are often

included in rehabilitation strategies, there is a lack of suitable courses or resources to

assist with other prominent difficulties, such as inappropriate social behaviour, which

impact on re-integration (Kelly, et al., 2008). To understand the effects aggression has

on survivors’ community re-integration efforts, the current research examines the

impact perceptions of dangerousness have on people’s willingness to interact with

adolescent survivors of brain injury.

In conclusion, brain injuries occur frequently for young people aged 15-24 at a

time in their life when they are separating from their parents and family and trying to fit

in with peers. Being accepted by others is crucial as is appearance and how others

perceive them. Understanding the public’s attitudes towards this group provides useful

information when assisting re-integrating back into society. For adolescents, as for all

survivors of brain injury, the subsequent cognitive, emotional, behavioural and social

outcomes post injury may result in undesirable or negative attitudes from others. This

creates an unhelpful cycle where undesirable sequelae contribute to a lack of friendships

and socialisation, impacting well being. Furthermore, understanding how visible signs

18

of injury (in this instance a scar) influence attitudes is particularly relevant for

adolescents who may perceive a scar to be an added disadvantage, as it distinguishes

them as different from others. The following chapter will discuss visible disabilities and

the impact the visibility has on attitudes and outcomes.

19

CHAPTER 3

THE VISIBILITY OF A DISABILITY

Whether a disability is visible or not greatly influences the way a person is

viewed or defined by others (Crocker, Major, & Steele, 1998). An absence of outward

signs of disability implies an absence of disability and accordingly the individual is

placed into categories based on gender, culture, life experiences, expectations and

stereotypes (Miller & Sammons, 1999). Outward signs of disability, such as mobility , a

missing limb, speech impediment or facial disfiguration prompt a disabled

categorisation, which in turn influences expectations, i.e., people generally expect less

from individuals categorised as disabled than they do for the able bodied (Stone, 2005).

A common misconception about survivors of brain injury is that you can tell that

they have had a brain injury (Linden & Boylan, 2010). This may occur as we are taught

that we can easily distinguish who belongs in which category (disabled or absence of

disability) by visual or auditory cues (Stone, 2005). However, these perceptions are

often unfounded as it is estimated that 40% of people with disabilities have no visible

sign of disability (Asch, 1984). Whether these individuals experience discrimination

once people become aware of their disability, and if so whether they experience

discrimination in the same way or level as individuals with visible disabilities, is

unclear. The current research addresses this distinction.

Several studies have reported the detrimental social outcomes experienced by

people with disabilities. Examples include discrimination in obtaining and maintaining

employment relative to able bodied persons. Ravaud, Madiot, and Ville (1992), for

example, sent unsolicited job applications to over 2000 French companies describing a

person with or without a disability, and with high or moderate qualifications. The highly

qualified able bodied applicant was 1.78 times more likely to receive a favourable

20

response than the highly qualified disabled applicant, and the moderately qualified able

bodied applicants were 3.2 times more likely to receive a favourable response than the

moderately qualified disabled applicant.

Once people with disabilities obtain employment they report more overt and

subtle discrimination as well as less procedural justice and lower levels of job

satisfaction than able bodied employees (Snyder, Carmichael, Blackwell, Cleveland, &

Thornton, 2010). Furthermore, non-physically disabled employees report more subtle

and procedural discrimination and less perceived organisational support than employees

with physical disabilities (Snyder, et al.). This last finding may highlight a distinction

between visible and non visible disabilities, although it is difficult to infer this as Snyder

et al. did not mention the specific disability of the non-physically disabled.

Discrimination is also reported by students in higher education environments.

Students with physical disabilities report feeling marginalised, different and distanced

from other students as a result of waiting outside emergency exits for entry and sitting at

the front of the class (Holloway, 2001). Further research shows that students with

mobility disabilities have less choice about which university or course they select, due

to a lack of access and the necessity to remain close to medical facilities and family

support (Hadjikakou, Polycarpou, & Hadjilia, 2010).

When a person has no visible signs of disability, discrimination is less likely to

occur, unless the disability is revealed. Individuals with non visible disabilities may be

reluctant to disclose their disability as disclosure may prompt unwanted sympathy,

judgements about believability and impact existing relationships with others (Matthews

(1994) as cited in Matthews & Harrington, 2000). Furthermore, disclosure may result in

others being less inclined to accommodate the disability, as the person may look healthy

and happy (McClure, 2011). Nondisclosure of a disability is also used for impression

21

management whereby individuals with non visible disabilities want to be seen “only” as

a person (Matthews & Harrington, 2000). Concealing the disability also eliminates the

possibility of being labelled disabled, thereby maintaining a “normal status” between

the parties involved (Matthews & Harrington). As a result of possible consequences and

the associated discrimination, individuals with non visible disabilities spend

considerable time and effort concealing their disability from others (Matthews, (1994)

as cited in Matthews & Harrington).

Therefore, from a discrimination perspective, in some instances having a non

visible disability may be considered advantageous. However, there is a downside. The

effort involved in concealing non visible disabilities may produce secondary effects

such as increased anxiety due to the effort involved and worry about being discovered

(Matthews & Harrington, 2000). Furthermore, people with non visible disabilities

experience more emotional problems than people with visible disabilities (Ireys, Gross,

Werthamer-Larsson, & Kolodner, 1994).

Brain injury is a disability which may or may not result in visible signs of

neurological impairment. There may be noticeable thought, speech, motor or facial

impairments or there may be no outward signs of impairment at all. In some instances

survivors may initially have visible signs of brain injury in the form of bandages or

scars but over time these disappear, leaving the survivor with no outward sign of brain

injury, in spite of there often being significant non-visible injury, e.g., impairment of

cognition and interpersonal function. Road traffic accidents and assaults are two

common causes of TBI which may result in physical injuries (McKinlay, et al., 2008).

Initially, the injury may be obvious to others (bandages, scars); however, these signs of

injury may disappear or heal over time, leaving the survivor with no obvious outward

22

sign of disability. Brain tumours or haemorrhages are another type of brain injury that

may produce similar effects.

To assist with effective rehabilitation it is essential to understand the public’s

likely response to survivors of brain injury both with and without outward visible signs

of disability. This information is particularly relevant when assisting adolescents’

rehabilitation following a brain injury as adolescence is a time of self doubt about

appearance, looks and how they talk (Miller & Sammons, 1999), and this group (15-20

year olds) has one of the highest incident rates of TBI (McKinlay, et al., 2008). The

current research explores these issues and examines whether the public’s willingness to

socialise varies dependent upon whether an adolescent survivor has a visible sign of

injury or no visible sign of injury.

Research on visibility effects

McClure and colleagues examined visibility effects in relation to brain injury

and attributions. They found that when a male adolescent survivor of brain injury had

no visible signs of injury participants attributed his undesirable behaviours more to his

adolescence than his brain injury (McClure, et al., 2008; McClure, et al., 2006). In

contrast, when he had a visible sign of injury (head scar) participants attributed his

undesirable behaviours equally to his adolescence and brain injury. This finding

suggests that more consideration was given to the brain injury as the cause of the

undesirable behaviours when a visible sign of injury was present. McClure and

colleagues’ research examined the impact of visible signs of injury on attributions, but

there is a lack of research examining visible signs of brain injury and discrimination.

The current research considers this by examining the extent to which the visible

sign of brain injury (in this instance a scar) impacts on the willingness of other people to

socialise with an adolescent survivor of brain injury. The scar was chosen to represent a

23

visible sign of brain injury for a number of reasons. Road traffic accidents, falls and

assaults are three common causes of TBI for adolescents (McKinlay, et al., 2008), often

resulting in visible signs of injury to the head or face which may or may not disappear

over time. Similarly, brain tumours may result in a scar as a result of surgical

interventions which may later heal. A wheelchair was considered as an alternative

outward sign of injury but not chosen as this was considered to be more representative

of a physical injury as opposed to a brain injury. Facial asymmetry, speech and motor

impairments were not chosen as they would have been difficult to photograph and they

did not necessarily represent a visible sign that would disappear or heal over time.

Finally, portraying adolescents who had actually suffered a brain injury was not

considered due to ethical concerns. Members of the public may have recognised the

adolescent but were not aware of their injury, thereby potentially exposing the

adolescent to stigma. If the adolescent had no visible sign of brain injury, then that

would have to be imposed on their photo, which may be distressing for the adolescent.

Conversely, we would have to digitally alter adolescents’ photos that had facial scars

which may cause distress as the photo without scars may remind the adolescent about

their appearance prior to their injury.

In conclusion, people with visible and non visible disabilities face a number of

issues and difficulties but these factors vary depending on the visibility of their

disability. There is considerable literature examining physical disabilities, mental

illness, brain injury and discrimination but no research was found simultaneously

examining brain injury, visibility effects, adolescents and discrimination. The current

research therefore examines the effect the visibility of a brain injury has on people’s

willingness to socialise with adolescents who have sustained a brain injury. The

following chapter discusses stigma and related factors as the stigma concept provides a

24

conceptual understanding of the visibility distinction when related to managing

disclosure and outcomes (discrimination).

25

CHAPTER 4

STIGMA

People with disabilities routinely experience discrimination relative to people

without disability even when there is no outward suggestion that they deserve less

opportunity (with regard to employment or renting a house), support or friendship

(Miller, Parker, & Gillinson, 2004). Social psychology provides a conceptual

framework when examining stigma and the related concepts of stereotyping, prejudice

and discrimination (Crocker, et al., 1998; Hamilton & Sherman, 1994). These concepts

and their inter-relatedness are discussed in the following sections.

Stereotypes, prejudice and discrimination

Stereotypes are collectively agreed upon ideas or beliefs that are held about

social groups that can be quickly accessed (Hamilton & Sherman, 1994). Stereotyping

occurs when labels link a person to particular characteristics of a social group

(Goffman, 1963). Stereotypes are also described as cognitive schemas (Hamilton &

Sherman) which influence encoding, storing and retrieval of group-based information

(Biernat & Dovidio, 2000). Being aware of stereotypes is not necessarily negative; it is

only when a stereotype is agreed to and an emotional response developed toward it that

prejudice is implied (Biernat & Dovidio).

Prejudice, then, is a possible outcome of stereotyping and has been described as

“an aversive or hostile attitude toward a person who belongs to a group, simply because

he belongs to that group, and is therefore presumed to have the objectionable qualities

ascribed to the group” (Allport, 1958, p. 7). Prejudice, therefore, has an evaluative

component incorporating a cognitive (determining stereotype) and affective response

(danger, fear) to beliefs (stereotypes). Discrimination flows on from prejudice and is the

26

behavioural response to prejudicial attitudes (e.g., not employing or renting a house to a

person as a result of prejudiced attitudes) (Link & Phelan, 2001).

Stigma

Stigma is a more complex construct which may include all or some aspects of

the processes discussed above at any one time. Based on the constructs discussed above,

stigma occurs when labels (e.g., mentally ill) link an individual to stereotypical beliefs

which prompt prejudiced attitudes, which are then acted upon (discrimination).

However, there are more aspects related to the stigma construct than labeling,

stereotyping, prejudice and discrimination. Additional aspects include different types

and dimensions of stigma and factors influencing the development of stigma. The

following paragraphs discuss some well known definitions of stigma and discuss

different types of, and dimensions to, stigma.

Stigma was defined by Goffman several decades ago as “an attribute that links a

person to an undesirable stereotype, leading other people to reduce the bearer from a

whole and usual person to a tainted, discounted one” (Goffman, 1963, p. 11). Although

this definition is still relevant today, it does not include the consequences of being

stigmatised and the context and process of stigma. For instance, it is suggested that

stigma occurs when a power imbalance exists, that is, when more powerful groups have

the power to stigmatise other less powerful groups (Link & Phelan, 2001), and when

someone possesses an attribute that is devalued in one social context (Crocker, et al.,

1998). These additional factors suggest that stigma is a social construction which

changes dependent upon culture and power balances (Dovidio, Major, & Crocker,

2000).

When considering these additional factors, stigma can be defined as a social

construction; a distinguishing mark causes devaluation by others which occurs when a

27

power imbalance allows labeling, stereotyping, exclusion, status loss and discrimination

(Dovidio, et al., 2000; Link & Phelan, 2001; Link & Phelan, 2006). This last definition

conveys a fairly succinct description of stigma but it is important to bear in mind that

not all components described are required at any one time for stigmatisation to occur

and in the literature any of the components are interchangeable with the term stigma.

Finally, the rationale behind the stigma concept is that when others are labeled, creating

a “them and us” situation, and linked to stereotypes (which are typically undesirable

attributes) a justification exists for discriminatory behaviour (Link & Phelan, 2006).

A number of different types and dimensions of stigma will be discussed below.

Goffman (1963) differentiated between visible and invisible stigmatising conditions

using the terms discredited and discreditable stigmas. A person with a visible stigma is

stigmatised and discredited by others based on their visible sign of difference (ethnicity,

disfiguration). A person with no visible sign of stigma is discreditable but not yet

discredited. In these circumstances illness or disability can only be inferred based on

other signals such as labels, behaviours or psychiatric symptoms. Individuals with

invisible conditions face a dilemma when deciding whether or not to disclose their

condition as there are advantages and disadvantages either way.

Goffman (1963) further classified stigma according to condition; tribal

identities, blemishes of individual character and abominations of the body. Tribal

stigmas are common stereotypes or group-based inferences about ethnicity, gender and

age that are constantly activated as a result of repeated exposure and are therefore

quickly accessed and retrieved (Biernat & Dovidio, 2000). Furthermore, tribal stigmas

are consensually held and culturally transmitted within groups (Biernat & Dovidio).

Individual character blemishes may involve similar processes as tribal stigma and

include stigmatising conditions such as mental illness, where common stereotypical

28

beliefs include notions that people with mental illness are inferior and require coercive

handling, also that they need to be cared for and are socially threatening (Angermeyer &

Matschinger, 2004; Biernat & Dovidio; Holmes, Corrigan, Williams, Canar, & Kubiak,

1999).

Abominations of the body stigmas (disfigurement, some medical conditions,

cerebral palsy) are generally less common and therefore not as readily activated and

may invoke an emotional response first, as opposed to stereotypical knowledge, due to

the visible nature of the condition (Biernat & Dovidio, 2000). Tribal and abominations

of the body stigmas are typically visible stigmas whereas individual character stigmas

can be visible or non visible.

Jones et al. (1984) identified six dimensions of stigma, these include;

“concealability” (the visibility of the condition), “course of the mark” (will the

condition become more salient or deteriorate over time), “disruptiveness” (level of

impact on relationships), “aesthetics” (physical manifestation of stigma), “origin”

(cause of condition) and “peril” (perceived danger to others). Concealability, aesthetics

and disruptiveness are closely related to Goffman’s (1963) concepts of visibility,

abominations and individual character blemishes, respectively. The cause of a

stigmatising condition and perceived danger are concepts that have been well

researched with regards to the impact they have on discriminatory and prejudiced

attitudes.

Researchers argue that the most important aspects of stigma are the visibility

and controllability or cause of a stigmatising condition (Crocker, et al., 1998). Visible

stigmas activate schemas about stigmatising conditions which influence attitudes

(Crocker, et al.) and perceived controllability has been shown to influence attitudes

(Weiner, et al., 1988).

29

Finally, three types of stigma have been described in the literature; public

stigma, self stigma and courtesy stigma. Public stigma refers to stereotypical, prejudiced

and discriminatory practices directed by the general public towards the stigmatised (P.

W. Corrigan & Wassel, 2008). Self stigma develops when stigmatised individuals

internalise public stigma and apply the stereotype personally (P. W. Corrigan &

Wassel). Goffman (1963) also coined the term “courtesy stigma”, where individuals

who are associated with stigmatised individuals experience stigma. While these three

types of stigma clearly identify groups impacted by stigma, the term ‘stigma’ in itself is

a stigmatising term and several researchers suggest using discrimination instead. Using

the term discrimination places the focus of research on the perpetrators of

discrimination and changing factors associated with this, as opposed to focusing on

changing factors associated with the recipients of stigma (Link & Phelan, 2001; Sayce,

1998). The brief descriptions discussed above show that stigma, stereotyping and

prejudice are closely related constructs. To further understand their connectedness,

related aspects of stigma, stereotyping and prejudice are discussed.

Relationship between stigma, stereotyping and prejudice

Stigma and stereotyping are related as stereotyping and stigma often co-occur

but in some instances stigmatisation occurs without prior stereotyping (Biernat &

Dovidio, 2000). For example, tribal and character blemish stigmas are more likely to

invoke strong stereotypical beliefs and subsequent stigmas associated with these groups

but abominations of the body (e.g., disfigurements) are more likely to produce affective

reactions initially which impact stigma avoidance directly without necessarily invoking

stereotypical knowledge (Biernat & Dovidio).

Stigma and prejudice are related as stigma (discrediting mark) most likely leads

to prejudice (cognitive and affective response) but stigma is more encompassing and

30

includes additional factors such as character and identity attributions and individual and

group reactions to the stigmatised (Dovidio, et al., 2000). Also, stigma is socially

defined which infers that stigmatising “marks” vary over time and culture (Dovidio, et

al.). Some researchers suggest that stigma and prejudice are similar constructs and that

the difference in definitions results primarily from the populations studied (Stuber,

Meyer, & Link, 2008). A review of 18 models of prejudice and stigma found support

for this claim (Phelan, Link, & Dovidio, 2008). The review found that stigma

researchers focus on individuals who are stigmatised as a result of “unusual” conditions

(mental illness, facial disfigurement and HIV) as well as the stress resulting from the

stigma or stress in maintaining vigilance (Stuber, et al.). Prejudice researchers focus on

class, race, age and gender divisions, and structural forms of discrimination (Stuber, et

al.). Finally, it is suggested that the term stigma can replace a number of the constructs

discussed (labeling, stereotyping, prejudice and discrimination) and the processes can

occur in varying degrees (Link & Phelan, 2001).

Stigma and brain injury

Some groups of people may be subjected to multiple forms of stigma. For

instance, an adolescent with brain injury may be stigmatised due to their age (tribal),

stigmatised as a result of their brain injury (blemish of character) and/or stigmatised as a

result of facial disfigurement (abomination). Survivors’ of brain injury may internalise

public stigma and develop self stigma, resulting in them believing stereotypical

information about their injury or illness, impacting recovery. Furthermore, survivors’ of

brain injury may experience stigma in different ways depending on whether they have

visible markers of injury or not, and whether they choose to disclose or not disclose

their injury.

31

When identifying who might experience different types of stigmatising

conditions (tribal, character blemishes and abominations of the body), it is possible that

when a scar or facial disfigurement is present an emotional response is the first reaction

(abominations of the body), but when there is no physical sign of stigma, stereotypical

or common beliefs are invoked (character blemish). The current research explores this

distinction to ascertain whether the public’s willingness to socialise with adolescent

survivors of brain injury varies dependent upon whether their injury is visible (facial

disfiguration; abomination stigma) or non visible (character blemish stigma).

In conclusion, the current research explores public stigma and focuses on the

effect the visibility of a brain injury (character blemish and abomination stigmas) has on

the willingness of others to socialise with adolescents who have sustained a brain injury.

The cause of the brain injury is also examined as perceptions of responsibility may

influence people’s willingness to socialise with survivors and perceptions of

dangerousness are examined as this may also influence others willingness to socialise.

The following chapter discusses danger and responsibility models of stigma and other

factors that may impact on people’s willingness to socialise.

32

CHAPTER 5

DANGER AND RESPONSIBILITY MODELS

AND FAMILIARITY AND KNOWLEDGE ABOUT HOW TO

INTERACT

There are potentially a multitude of factors which may influence peoples’

willingness to socialise with adolescent survivors of brain injury. Previous chapters

discussed visibility, stereotyping, prejudice, stigma and the gender of the adolescent

survivor as possible contributing factors. The current chapter will consider other factors

purported to influence discrimination. The degree of injury or resulting disability,

ethnicity, education, socio economic status, whether an individual has an authoritarian

/coercion-segregation attitude and even the time of day may all influence discriminatory

responses. However, the current research is focusing on people’s level of familiarity or

contact with individuals’ with brain injury, causal attributions regarding the cause of a

brain injury, perceptions of dangerousness and a lack of knowledge about how to

interact with survivors of brain injury.

These factors were selected as they were shown to have influenced

discriminatory behaviours in relation to mental illness and/or brain injury or were

discussed as possible reasons why people would be reluctant to socialise with

individuals with disabilities (lack of knowledge about how to interact). These concepts

are discussed below.

Familiarity with individuals with brain injury

Familiarity with brain injury can be defined as the amount of knowledge

someone has about brain injury and/or the amount of contact they have had with

individuals with brain injury (Holmes, et al., 1999). Familiarity with individuals with

mental illness has been examined using the level-of-contact report developed by

33

Holmes et al. The measure includes 12 items describing varying levels of personal

contact such as: “I have watched a movie or television show in which a character

depicted a person with mental illness”, “a friend of the family has a severe mental

illness” and, “I have a severe mental illness” (Holmes, et al., p. 450). Respondents

endorse statements they have experienced and the highest level of contact is used as the

final indicator of degree of level of contact.

Using the level-of-contact report, the mental illness literature finds that people

who have experienced more contact with individuals with mental illness are less likely

to engage in stereotyping and discrimination (P. W. Corrigan, et al., 2003). Further

research exploring the public’s perceptions of adults with mental illness found that

greater familiarity with individuals with mental illness resulted in lower perceptions of

dangerous (P. W. Corrigan, Green, et al., 2001). A similar pattern occurred with regard

to endorsing prejudicial attitudes (authoritarian and benevolence) (P. W. Corrigan,

Edwards, et al., 2001). However, there was an exception to these findings; adolescents

who had more contact with individuals with mental illness were more likely to endorse

dangerous perceptions and stigmatising attitudes (P. W. Corrigan et al., 2005).

Furthermore adolescents who were more familiar with peers with mental illness were

more likely to view them as more dangerous than adolescents with less familiarity.

Relative to the mental illness literature there is little research examining

familiarity with individuals with brain injury and the impact the familiarity has on

discriminatory behaviour. The only study found that specifically examined familiarity,

brain injury and discrimination reported that participants’ contact with individuals with

brain injury had no effect on prejudicial and discriminatory attitudes (Linden, et al.,

2007). However Linden et al.’s research measured familiarity using a yes/no question

with limited statistical power (P. W. Corrigan, Green, et al., 2001).

34

Related research examining brain injury, familiarity, visible signs of injury and

attributions found that familiarity with brain injury did influence attributions. When

shown a photo of an adolescent male with a head scar who was described as sustaining

a brain injury, participants with more familiarity attributed his undesirable behaviours

(angers quickly, lacks motivation and self confidence and sleeps a lot) more to his brain

injury than his adolescence, than people with less familiarity, who attributed the

behaviours more to his adolescence (Foster, 2010). Furthermore, when the adolescent

was depicted with no scar there was no difference in attributions between the groups,

suggesting that the scar acted as a moderator of the relationship between familiarity and

attributions (Foster). The familiarity measure used in Foster’s study differed from that

used by Linden et al. (2007) (who used a categorical measure asking participants if they

had had contact with people with brain injury – a yes or no response). Foster used a

modified version of a nine-point level-of-contact scale developed by Holmes et al.

(1999), which was then converted into high and low familiarity.

Lack of knowledge about how to interact

Another factor which may influence people’s willingness to socialise with

adolescent survivors of brain injury is a lack of knowledge about how to interact with

survivors. This topic has received little attention in the mental illness and brain injury

literature. One study, examining stigma and pharmacy students’ beliefs about

individuals with schizophrenia from six countries, found that perceptions that people

with schizophrenia were “difficult to talk to” was one of three factors, along with

unpredictability and perceptions of dangerous that predicted higher social distance (Bell

et al., 2010). Crisp, Gelder, Rix, Meltzer, and Rowlands (2000) found similar results

when examining mental disorders and the public’s attitudes. Participants felt it was

difficult to talk to people with any of the disorders described (drug and alcohol

35

addiction, eating disorder, panic attacks, severe depression, schizophrenia and

dementia), and described people with alcohol and drug addiction and schizophrenia as

dangerous and unpredictable.

Albrecht, Walker, and Levy (1982) found that being responsible for a

stigmatising condition (conditions ranging from diabetes and cancer to mental illness

and drug abuse) did not explain the willingness, or lack of willingness to socially

interact. To understand why being responsible did not account for this, they asked

participants why they thought other people did not want to socialise with individuals

with stigmatising conditions. Ambiguity in the social interaction was cited; a lack of

knowledge about how to interact or respond to people with stigmatising conditions and

also apprehension about things they did not understand and new things. Also, threats to

social and physical well being, physical offensiveness, moral weakness and feelings of

guilt for being healthy were cited.

Albrecht et al. (1982) used open-ended questions in the third person to minimise

social desirability effects and to negate the need to explain responses on a forced choice

Likert scale or something similar. Questions included: “Some people do not like to be

around a person who is physically disabled (or who has a social disability such as

alcoholism or some other addiction). Why do you think they feel this way?” Their

sample consisted of 150 managers enrolled in further education. The sample was all

white college graduates, mostly married and urban dwellers. This limited sample may

explain the differences found in the responsibility results which contradict P. W.

Corrigan et al. (2003) and others research.

As identified by Albrecht et al. (1982) some people are unsure about how to

respond or act in the presence of people with disabilities or mental illness and others

believe that it is difficult to talk to them (Bell, et al., 2010). Perhaps they were raised in

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a time when people with disabilities were in special classrooms, schools or were

institutionalised (Miller & Sammons, 1999). Perhaps they are scared of saying the

wrong thing or looking in the wrong place or using the wrong language (Miller, et al.,

2004). Further, the brain’s automatic response to differences, whether it is disability,

appearance, illness or potential threat can prompt uncertainty, anxiety or avoidance

behaviours (Miller & Sammons). Automatic reactions were essential early survival

skills, however these, a lack of socialisation and being told “not to stare” by parents and

others may all contribute to feelings of discomfort about differences and stop people

engaging with people with disabilities.

We learn about how to respond to differences by watching others, and new

encounters with individuals with differences facilitate new learning and a broadening of

comfort zones. However, only recently have institutions become outmoded in some

countries, resulting in people with disabilities and mental illnesses living in the

community. New encounters that are unfamiliar prompt comparison with expected

norms or ideals as we try to understand and accommodate differences (Miller &

Sammons, 1999). Some people may have had little contact with individuals with

disabilities and mental illness; therefore, it is not surprising that they may be anxious

and uncertain about how to respond to differences. The current research will explore

this concept by examining knowledge about how to interact as a factor influencing

willingness to socialise.

Responsibility Model

Causal Attributions; effects of being responsible or not responsible for causing a brain

injury

Attribution theory was identified as a suitable theoretical model to examine

causal attributions and discriminatory attitudes towards survivors of brain injury. It was

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chosen because it views people as active thinkers who evaluate events by looking for

the cause of a situation and then use this causal information, which may be incomplete,

in whatever manner they deem appropriate (Jones et al., 1972). Furthermore, attribution

theories specifically examine the rules or processes people use when they evaluate the

cause of events or behaviour (Jones, et al.). Therefore, attribution theory examines

causal attributions (responsible or not responsible) and mediating factors which may

influence that relationship. Mediating variables potentially explain how one variable

leads to another variable (Baron & Kenny, 1986). For instance, it would be possible to

determine whether there is a direct relationship between responsibility and willingness

to socialise or w